Surgical Menopause

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1

Hi,
I’m 45 and was dx with 3 large oestrogen positive tumours in June last year, after all the treatments,I agreed to have my ovaries removed, that was 6 weeks ago, now I’m in a really terrible state.I have severe hot flushes, up to 6 an hour, have terrible headaches, but the worst is the crippling depression and anxiety.I have taken a very low dose of venlafaxine for many years but its not helping with the depression at all.
What I wanted to ask is, with surgical menopause,do the effects go on indefinitely.or are they self limiting?
I’m on Arimidex so realise that I dont have any oestrogen whatsover circulating,
thanks

SS

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I had a full hysterectomy in 2004 for endemetriosis so went into full menopause then. I had HRT for 4 years until my dx of bc in Feb 08. I have been on antidepressants for 10 years for long term mood problems. Without the hrt, I have had the crippling feelings of anxiety and depression you describe. My anti depressant medication has been altered and raised and this does help but does not eliminate the feelings completely. I am learning what my triggers are that set off the worst of the depressive moods. Usually tiredness is one such trigger. We have all been through so much it is easy to underestimate this when you are trying to get back to some semblence of normality. I find I am very sensitive to the criticism of others and get upset. Many do not understand the long term physical and psychological effects of bc, treatment and being in an early menopause. I am finding it easier to manage my flushes and moods but I still have my bad days. I do feel better than I did when i first got thrown into the menopause. I am just slowly learning how to manage it. My flushes are ok if i sleep under a very light duvet with my bedroom windows open. i stayed with my other half last nite and he lives on an 8th floor flat and I woke at 4am as was too hot as the heat from the flats surrounding him makes hids place v hot.
I am on arimidex too and had chemo and rads ( I am 40)
I hope I have been of some help to you.
Rachy xx

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I also went into surgical menopause following oopherectomy last year. (I was 43). I am really struggling with the memory loss, cognitive impairment, clumsyness and fatigue - all of which is exacerbated by taking Arimidex I think. I am terrified that “this is it” now and that the symptoms will never subside.

I am taking some comfort from my mother who had a full hysterectomy aged 45 - she never took HRT because it made her feel extremely unwell and in her words she just stuck it out. She said it took years for the worst of the symptoms to subside. But by the time she was 50 the hot flushes, extreme mood swings and fatigue had stopped.
How we women on Arimdex are likely to fare I don’t know.

If you try to find information on dealing with surgical menopause all you get is reams of info on HRT, which for me having ER+ cancer is not an option. I don’t regret having the oopherectomy as I felt that I struck a very direct blow to the cancer - but living without any oestrogen at all is very very tough.

Good luck with everything.

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Thank you both for taking the time to reply.
As you say, on top of all the treatments and feelings that go along with a BC diagnosis and the ravages on our bodies, we now have to try and live with what is left to us, and in the case of surgical menopause and Arimidex, is not a lot, (well, certainly nada oestrogen)
I really didnt expect the dramatic effects of the ooopherectomy, I assumed I had gone through the worst of it during chemo, when I wrongly assumed the chemo had triggered my menopause, but this was just to be a temporary effect.
It does seem strange to me, that if removal of the ovaries is a standard treatment for ER+ cancers, why the effects are not more widely publicised? Or is it because the nearer you are to natural menopause, the less effects you have.
At the moment I am crippled by overwhelming depression , panic attacks and 3-4 burning flushes per hour, yes I have suffered from depression in the past and have always managed to get a handle on it, but this feels more physiological than psychological if you know what I mean, its like something that has taken over my body and mind that I dont have much control over, whatever strategies I use.
My GP explained that us females have lots of oestrogen receptors in the brain, when we start the menopause naturally, these receptors wean themselves gradually off it and of course if you are not taking AI’s, the adrenal glands produce oestrogen to satisfy the receptors somewhat.But in the case of ovary removal, the receptors suddenly find themselves without anything and the chemistry in the brain goes haywire, so although I know and understand completely the mechanisms that are going on, it doesnt make it any easier to live with.
My GP has doubled my dose of venlafaxine, as she says in some cases, they help ‘satisfy’ the oestrogen receptors in the brain, time will tell whether that is the case.
Molly, its good to know your mum was able to stick it out, and to know that it eventually got better, but as you say, how us on AI’s, with therefore no switch over from ovary produced to adrenal produced oestrogen will fare is probably unknown.
Rachy, I’m sure that those of us with a history of depression will not manage as well as others, I guess its kind of like a record with a scratch, the needle always goes back to that groove, the only difference being that hopefully we have been able to learn some coping strategies and can put them into place when we dont feel so overwhelmed,
thanks again to you both for your replies x

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Dear stillstanding, I had terrible hot flushes from arimidex and zoladex. My oncologist prescribed me a half dose of venaflexine, which has worked very well. i hope your increase in dose has a good effect.
Best wishes, Nicky

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Dear Stillstanding, I too opted for surgical menopause in Jan 2009. I was diagnosed with hormone sensitive multi-focal cancer in my right breast and had mastectomy in Nov 2008. I am 52 and had not started menopause ( my oncologist said I had cast-iron ovaries). For the first 2 weeks after the oopherectomy I had no problems, then the hot flushes really kicked in, my worst day I counted 20 during the daylight hours. I was worse at night, every time I moved in bed, I would get a flush. I was getting desperate and very down. I feel that the lack of proper sleep is a big key, particularly with the depression. I am in Australia and my doctor gave me a prescription for a low dose of Effexor which I did not really want to start taking. I read that a lot of women were finding help with sleep by taking Melatonin which I am happy to say is working with me. I have also noticed that my flushes have eased considerably in the last month, so maybe these things ease by themselves and your body adjusts to the changes with time. I have been taking Arimidex since late January 09 and did not need to start taking the Effexor. I hope that your symptoms ease and I think that the option of surgical menopause was the correct one for me. I find that I am a bit stiff in the joints but I try to keep active, walking and stretching, and plenty of water. Keep your chin up, you are not alone. Albiongirl.

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Hi
I have finally got my onc to agree to refer me for a oopherectomy as I am on 2 years zoladex induced menopause and have had an awful time with the hot flushes and I cant bear the thought of ostrogen racing round or another menopause in ???may years.
My doctor has put me on chlonidine, its a blood pressure tratment that is also used to help with the hot flushes. I used to have about 2 or 3 and hour and had awful trouble sleeping but even though I still get the odd one its down to a couple a day and only one or two at night and only one if I dont wake up in the night.
Hope this is useful. Good luck.
S x

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Dear Stillstanding,

I was on 75 mg of venlafaxine (Effexor) a day for anxiety, my GP put me up to 225 mg a day when I was on chemo as I was so anxious and had bad hot/cold flushes and night sweats. I am now back to 37.5 mg a day as the Tamoxifen flushes have subsided, so don’t think you will have to stay on a high dose forever (unless it works so well that you need/want to.)

I read a scare story about Venlafaxine being very hard to wean yourself off, with bad withdrawal effects, but as I say I have cut down from 225 mg/day to 37.5 mg/day with no ill effects whatsoever.

There is also a slow release form which might be better than the generic kind, if your GP will prescribe it.

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Really appreciative of the replies,
Starflower, the scare stories about venlafaxine withdrawal are in fact, very,very true, as attested by the many legal suits bought against Wyeth in the US.

I myself have been unable to reduce to lower than 37.5mg and that was after 5 very gradual withdrawals,never been able to stop it altogether without becoming almost catatonic.

The problem occurs when you have been taking them for an extended period of time (in my case 15 years) as it permanantly damages the serotonin receptors, the drug works by stopping certain serotonin and noradrenaline receptors from ‘picking up’ too much of the chemicals in the brain, the theory being that more is then available to combat our low mood, unfortunately, after a very long time, if the venlafaxine is withdrawn, the receptors never start to work on their own again.
GP’s and governing health bodies have in the last few years become aware of this problem and the guidlines are that they only be used for a short period, never for children and with a regular monthly review.

All this being said, I have never had any problems whilst being on it all these years, only when Ive tried to withdraw from it.
I dont have any qualms about increasing my dose and it certainly seems to be helping with the severity and quantity of hot flushes and I have no problems continuing to take it whilst it works.

Albiongirl, thats very interesting about the melatonin and something I’d be very interested to try, I think you are right in that eventually the body does adjust to the absence of oestrogen over time, how much time I guess depends on each individual, I do hope my adjustment is in months rather than years.My gynae also said that he found that my ovaries were ‘ripe and fully functioning’ after a hysterectomy, chemo and zoladex !

I guess, for me, it was the final insult from the BC beast and I’m angry that I was forced into a situation that I really didnt want to be in, namely a body with zero female hormones but there we go,we got to do everything we can to beat the intruder.

thanks again

SS

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I am not too worried about staying on venlafaxine as I have been on one or other SSRI for the last 7 or 8 years, seroxat, prozac, citalopram, now venlafaxine.

Stillstanding, did your gynae do tests to see how functioning your ovaries were, because mine are still as sturdy as ever after 6 FEC and on Tamoxifen - Zoladex will be next but I am going to ask if I can have my ovaries removed. Oestrogen is my enemy.

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i,m on venlafaxin purely for hot flushes and night sweats after having ovaries taken out last year, this has helped quiet a bit can get some sleep which if i don,t sleep well i get depressed doc said i will be on it for 2yrs also got another 2yrs of takin tamoxifen
Lornaxxx

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Hi again Starflower,

It was my BCN who did hormone status blood test,as I’d had a hysterctomy 7 years ago but my ovaries were left, usually after a hysterectomy the ovaries pack up around 5 years, so they wanted to know how active mine were,they were indeed fully functioning.

After 3 months of zoladex,I had the oopherectomy and the surgeon commented that my ovaries were suprisingly fertile ( pathology showed lots of eggs)and they were as large and functioning as a 20 year old (Im 45!) So I guess the chemo, zoladex and hysterectomy hadnt had any effect on them, so even though Ive had an awful time with this procedure, I feel reassured that a major influencing factor in my BC has now gone.

Starflower I do hope that your hospital will do it for you without any problems, I had to fight and push to get mine and eventually had to finance it myself, because my op turned out to be a lot longer stay in hospital than I first thought, the cost was a heck of a lot more than I budgeted for too, but I feel Ive done the right thing for me personally and I really hope you too can do what you feel is the best in your situation.

SS

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Hi lorna

Yes, Ive heard of so many people getting relief from menopausal symptoms by taking venlafaxine and gynaecologists seem to agree it helps a great deal, I’m glad to hear its working for you, what dose do you take? Its interesting to hear you say you’ll be on it for 2 years, when I asked how long I’d need to be on the higher dose for menopausal symptoms, I couldnt get a straight answer as they have no idea how long each individual persons menopause goes on for, so I guess I wont know until I try to reduce the venlafaxine.

I really understand about the not sleeping and depression connection, its really hard to fight the lows isnt it, when youre so tired and have no energy.I still dont sleep well at all.

SS

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Despite my early post, I am now really struggling again with the menopausal depression. I have been on venelafaxine before for depression and found it useless. I know everyone is different and I have been on nearly every anti depressant going. I am on 60mg citalopram and 50mg amitryptillyne so I am on a fair amount as it is. Has anyone had problems with continual craving for sweet things? I am continually stuffing my face with rubbish food so consequentally am putting on a lot of weight. I have tried loads of different things but can never seem to stick to them as the depression comes back all the time and can only be briefly relieved by eating.

Rach xx

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I too am finding the depression unbearable currently taking prozac but find most days I feel really down, and very tired also pains in hands and other joints and also eating a load of rubbish too especially sweet things best wishes suzan x

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Thanks suzan for sharing your experience. I am not the only one with this problem.This area of bc treatment seems to be totally ignored as find nothing about it anywhere or how to manage it.

R xx